Cute Video

Happy Turkey Day!

I can’t believe I haven’t blogged in two months!!  I guess things have been busy.  We have moved into our new house and we are really enjoying the extra space and getting settled in.  Peyton has adjusted well to all the changes. 

She has had an eventful few months.  It started off with a UTI that made her pretty miserable for about 3 or 4 weeks, then she decided that holding her pee was a good idea since it was painful to go when she had her UTI.  She did this for another couple of weeks and seems ok on that front now.  On the tail end of the UTI, she caught a cold which developed into Pneumonia.  That was caught really early so no hospitalization, thank goodness.  It has taken her weeks to even start to get back to normal and she has been very very very grumpy.  In the midst of all this, we also added another seizure med called Onfi and after we weaned her onto that, we began the wean down of Phenobarbital.  We are half way thru and besides some extra seizures, she is tolerating the wean well.  We are seeing more alertness from her and that is always great. 

Her Physical Therapy and Occupational Therapy are going well and she is scooting right along.  Progress is very slow, but she does make progress.  We have the best therapists – they teach us so much and have the best ideas.  No matter how down I feel about Peyton’s progress, just being there for one session with them and I feel so much more positive and optimistic.  They are rays of sunshine in our weeks many times.  I don’t get to be there much for the sessions since I am usually at work, but I always get a play by play after they leave and it’s quite the highlight of my day!  We are going to start Speech Therapy next month.  This will help Peyton hopefully learn some communication skills and also help her with her swallowing.  There is a fear that her pneumonia could be a result of silent aspiration so the Therapist has recommended she have a swallow study done to see if that is what is going on.  In the meantime, we are using different techniques to help her when she eats.  The ketogenic diet makes it difficult sometimes, but we can usually find a work-a-round. 

Oh yeah, Peyton turned TWO in October.  It was a low key birthday since she was so under the weather and we didn’t even have a party.  To be honest, birthdays can be difficult.  It’s easy to look at her and think about what she can’t do and what all the other two year olds can do.  We have to shake this off and celebrate Peyton and who she is and what she means to our family.

Happy Thanksgiving everyone!!!  I hope everyone gets to spend the day with family or friends and remember how much we all have to be thankful for.  Posting a few pics of the blessings in my life.  

 Hanging out with big brother

 Watching some tv with her brother and sister

 Puzzle Time with her OT:-)

Ducky

Me and one of my biggest blessings in life:-)

Marching On

Still feeling a little raw from the fallout of the MRI bomb, but it’s time to move forward.  We don’t really have the luxury of moping around for too long.  There are too many other things to do and take care of and moping and being sad just really hinders us in all areas.  So we nurse our broken hearts and let the tears fall and we become even more determined to do every single thing we can to help Peyton reach her full potential.  The MRI doesn’t really change anything in how we care for her or what therapies she gets or how much we love her.  The MRI was more of a punch in the gut to Ed and I as there was some finality in REALLY accepting that Peyton wasn’t just going to snap out of all of this, quit having seizures and go on to live a normal life.  We really really do have a disabled child and she will be affected her entire life by this.  Even if the seizures stopped tomorrow, whatever causes those seizures is certainly still a problem.  This is reality. 

BUT

I believe (we believe) with all our hearts that Peyton is capable of great things and there is no MRI on earth that will convince me any differently.  She is so loved and so cared for and so prayed over and we KNOW this makes a difference in what she will accomplish in her life. I don’t go against conventional medicine and what the MRI showed us is unfortunately very real, but no one can tell us with any certainty that she can’t do great things, in whatever capacity that might be.

We haven’t really talked to Blake and Mackenzie about all we learned at the visit on Monday, except to tell them she wouldn’t be a candidate for surgery.  You know the funny thing?  They were relieved their baby sister wouldn’t have to have surgery.  Even if we did tell them all about the visit, they wouldn’t be heart broken or sad or glum.  As far as they are concerned, they have accepted her disabilities and they just keep on loving her.  I know for us it’s a little different with all the complexities that go with being the parent of a child with such severe disabilities, but their joy and love rubs off on me and keeps me grounded when it would otherwise be so easy to curl up in the fetal position and stay there. 

As soon as I posted the blog about the MRI, text messages from friends & family came rolling in, along with calls and visits.  Like immediately.  We are blessed beyond measure with the people in our lives that love us and love our kids and support us unconditionally.  It truly lifts us up in the darkest of times.  God really watches over us even when I am not talking to him like I should.  I sometimes get a little angry at him over Peyton’s suffering.  I wonder if maybe she is being punished for the wrongs I have done in my life, but I know that’s not how God works.  I still don’t see the plan in all of this, but I know there is one and I know Peyton has and will continue to touch lives all around her. 

Thank you for continuing to read Peyton’s story and sending so many prayers our way.  

MRI.......maybe not such a good idea after all.

Yesterday was the long awaited MRI.  We saw the neurologist immediately after.

Surgery is not an option and probably won’t ever be. 

The MRI showed that her brain has not developed very much since birth (we knew this, but seeing it on a MRI makes it more real and possibly more awful)

She will never be a normally functioning person (we knew this too) – our beautiful girl will have a lifetime of pretty severe challenges.

I don’t see a plan in all of this (but in my heart I know there is one)

I want to say something inspirational and good and I’m sure I will….just not today.

Blessings

A few little positive tid bits to share…..

·    Peyton’s tummy issues are getting better.  After speaking with her dietitian we think she may be lactose intolerant.  If you recall, when she was in infant she had a dairy allergy and when started the keto diet, we still had her off of dairy.  We weaned her back on to dairy about six months ago and most of her meals consist of butter and heavy cream.  We have cut out the butter and cream and are using oils, avocado, and other non-dairy fats and we are already seeing a huge difference after just 2 days.  She was having screaming fits from the tummy pain and although she is still fussy at times, the screaming fits are starting to subside. 

·        Since Peyton started having seizures at 10 weeks old, we rarely, if ever, let her out of our sight.  This means she has slept in our bed since the beginning and yeah yeah yeah, I know how bad a habit this can be but we were truly terrified to leave her alone at all and especially at night.  Just recently, we have realized that she is more than ready for her own ‘space’ and a more scheduled routine at night.  So now she has her very own toddler bed in our room in my line of vision and she has slept in it for almost a week and is doing GREAT.  She rarely if ever has seizures at night so this is not really a concern.  We purchased a video monitor and we can watch her after we put her to bed.  It’s a good feeling to do something as ‘normal’ as getting her adjusted to sleeping in her own bed.   Before she was born, I had picked out the cutest bedding and was so excited about using it.  After the seizures started, I had a hard time even looking at that bedding because it represented a loss of the ‘normal’ baby girl we had expected and planned for.  I actually boxed it up and put it in the attic (couldn’t quite bring myself to give it away).  Well, I have pulled that bedding back out again and looked it straight in the eye and put it on her sweet little toddler bed.  It is just as cute as it was when I picked it out and being able to use that bedding again healed something inside of me.  Kind of like looking the seizure monster in the face, sticking my tongue out and being thankful for the little girl that God chose to bless us with. 

It's a Crazy Life

So we are just wild and crazy right now!  We have had our house on the market for the better part of 3 years, basically because we have just outgrown it.  Even before Peyton came along, we knew we needed something a little bigger.  Since Peyton came along, we are even more crowded.  It’s been on the market for so long that we have kind of gotten to the point where we just didn’t think it would ever sell, but we just kept trying.  Well…..it finally sold and is currently under contract.  This is all well and good, but now comes the task of finding somewhere for all five of us to live.  It’s not like we can just shack up with family or friends till the right place comes along (all five of us is a lot to takeJ) so we have been on a house hunting mission to find the right place.  We did find another house within a few miles of where we live now so the kids can stay in the same school district.  We are in the midst of loan pre-approvals, inspections, appraisals, trying to get all our dates lined up, and making sure we aren’t suddenly homeless when we close on the sale of our house.  I just thought our life was chaotic – right now chaotic seems like a distant & pleasant memory because things are full on CRAZY!!  We have lived in our house for 11 years and this is the longest I have ever lived anywhere.  I moved around a lot as a child because my Dad was a missionary and then a pastor when we moved back to the United States.  All the moving and change never bothered me much (mostly because Mom and Dad did all the work!!) but now I am just in awe of my parents and all the times we have packed up and moved.  It’s A LOT of work!!!!  I’m a little daunted by the whole thing, but I know in 2 months, this will all be behind us and we will be peacefully living in our new house…..Right?????

On to the baby girl (the real reason you read this blog and so nicely allow me to throw in all the other stuff).  She is doing pretty well seizure wise, but she is having tummy issues.  The Ketogenic diet can typically cause constipation and it does with Peyton.  She is just miserable lots of times with her tummy.  Of course, we have to be careful what we give her because of the restrictions of the diet, but I am in touch with her dietitian to see if she has any ideas.  It has caused many many sleepless nights for her (and for us) so we are praying she can get some relief soon.  I found a ketogenic approved fennel tea that she can have so we tried this last night and it did seem to help her.

We go to Chapel Hill on September 24^th for Peyton to have a MRI with a follow up appointment the same day with her neurologist.  The MRI will focus on the left side of the brain where the seizures seem to be coming from.   This may or may not determine whether Peyton could be a candidate for brain surgery.  I don’t know yet how I feel about wanting her to be a candidate for surgery.  I know that we will leave no stone unturned in our quest for Peyton to have the best life possible so I guess I do want her to be a surgical candidate if it could mean more progress.  It is a conflicting feeling to want your 2 year old baby to be a candidate for brain surgery.  I haven’t quite figured out how to process all my mixed emotions on this.  I have read many success stories about pediatric brain surgery and how development can soar and this is our dream.  I want to come to this blog one day and run out of room telling about all the soaring Peyton is doing developmentally.  I am allowed to want that.  Acceptance is a theme in our daily life and we do accept that Peyton is not like other children and that Peyton is most likely going to have a lifetime of issues due to these stupid seizures, but even though we accept it, we will keep pushing for more answers and ways to further her development. 

Check out the cute video that Peyton's nurse took of her.  She likes to make music:-)

   

Good News

We have been to Chapel Hill and had a 36 hour Video EEG and now we are back home again.  Her EEG did NOT show Infantile Spasms.  When she has an EEG, there is a little button we push every time we think we see a seizure.  She had several of the episodes that are of concern to us and hit the button every time.  As it turns out those movements didn’t even register on the EEG.  Nothing, not a blip, not a spike, not a change and definitely not hyppsarrythmia (the brain wave pattern that is the signature of Infantile Spasms).  I can’t tell you how surprised and how so very relieved we are to know she isn’t having infantile spasms.  

We arrived in Chapel Hill last Wednesday evening around 8:45pm and we were admitted pretty quickly.  By midnight, she was hooked up to the EEG and she didn’t like it!!!  She handled it admirably after everything was actually in place and she was hooked up, but she let it be known that EEG’s are not her cup of tea!  It was nice to see familiar faces and meet some new ones this time around.  I must say, Peyton always receives the best care at Chapel Hill.  They know lots about the keto diet so it’s always seamless with her meds and her food.  We are so grateful for the team that cares for her.

Her EEG actually looked a lot better than the last time she had one which was in March of last year.  Her seizures have always originated in different areas of the brain, left side, right side, upside, downside!  This time, her seizures all focalized in the rear left area of her brain.  We don’t really know what this will mean, but we do know that when they can see where the seizures are coming from, they can sometimes do a surgical evaluation to see if she would be a candidate.  This is a giant big huge deal and lots would have to happen and be evaluated before we ever got to that point, but at least we are a tiny bit closer to be able to do SOMETHING about these seizures.  We feel so helpless at times and we want to know we have exhausted every single avenue of treatment so that one day (hopefully sooner than later) we can say we killed the seizure monster.

Not really in her happy place

Watching Cailloux - nothing else to do when she's all hooked up!!!

EEG Hair.

Leaving the hospital and still pretty unhappy about the whole EEG thing!!!

24 Hour Video EEG

I have posted recently about the movements Peyton has been making that are suspicious for Infantile Spasms.  We have slowly increased her Vitamin B-6 to 200 mg twice daily to see if that would help but it really hasn't so her neurologist has suggested she have a 24 hour Video EEG to determine if this is what she is having.  She will be admitted to the hospital for it and we should get a call tomorrow to head that way when a bed becomes available.

Sometimes our life feels like a Tug-of-War.  Mackenzie (our sweet 11 year old) starts Middle School tomorrow.  This is such an important time for her and I want to be there for every single second and I will get to drop her off in the morning but I will probably be gone already by the time she gets home and the only way to hear about it will be on the phone.  I want to see her sweet face while she tells me about it.  I also want to be able to hear about big 4th grader Blake's first day (although it will be like pulling teeth to get him to talk much about it!!)  I feel so conflicted.  Peyton's health, of course, is of vital importance and it is urgent we have this EEG done so we know if she is having Infantile Spasms again, but I'm so frustrated that I can't be there for the other two kids.  I feel like we juggle juggle juggle (as all parents do!) but then the juggling act comes to a screeching halt while we deal with yet another health crisis.  We are blessed to have amazing family & friends who jump in at a moment's notice to help out, but I can't help but feel like my failure to juggle it all is an indication of my failure as Super Mom.  Thank goodness this sub par Super Mom has Super Dad, Super Grandparents, Super Nurses and Super Friends to help out with the juggling act.  It TRULY takes a village.

Please keep Peyton in your prayers as we travel to Chapel Hill for the Video EEG.  This will be her first EEG in over a year and I'm not sure she will be as compliant as she has been in the past when having these done.  Should be interesting.

Childrite Chair

I read a lot of other blogs written by other special needs parents.  I get a lot of good information from these other parents and one thing I have read about is the Childrite Chair.  It is like the special needs version of the Bumbo Chair.  I ordered one online for $150 (and that was with a coupon!!)  I grumbled quite a bit about paying that kind of money for it, but did it anyway because it seems to be of real benefit to a lot of the kids I read about.

The chair came in late last week while we were out of town so by the time we got home last night, Peyton was asleep and didn't get to try it out.  This morning, her nurse sent me these pics......

So, ask me now if I am still grumbling about the $150??????  You can guess my answer.  I LOVE THIS CHAIR.  I love seeing progress.  I love getting to see Peyton sit like a big girl and play with her toys.  Did I mention I LOVE THIS CHAIR???

Before and After

This photo was taken about 6 weeks ago and Peyton couldn't really hold herself up enough to even lean on the chair to keep her head up...

I took these pics this past weekend and just look at the difference in her head & trunk strength!!

Isn't she awesome?

AFO's

Peyton got her AFO’s today!!!  She did so well when we had them fitted on her this morning.  These are going to help her so much and give her some necessary stability for standing and eventually walking.  They are very stylish too with the pretty butterflies!

I had posted previously about the movements she was having in her sleep and her neurologist having us increase her dose of B-6 by 150 mg.  This actually did work for a few days, but last night the weird movements came back again and she is having them today, too.  So, Ed got a video of it and we emailed it to her neurologist.  He does feel the movements are suspicious for infantile spasms but the only way to really tell will be with an EEG.  We will increase her B-6 dose again and see if that helps and then in another week or so, if they continue, we will take her to Chapel Hill so they can catch the movements on an EEG.  We are praying they resolve with this next increase of B-6.

In other news, she continues to be her cute self and is just doing great with all her therapies.  She enjoys playing with her toys and tends to get bored when there is not a person or toy around to entertain her.  I tell ya, we are so happy to see her reacting to toys and to us that we will act like fools and cut cartwheels and stand on our heads just to see her enjoy being entertained.  The diet is going well and she got to eat eggs this week.  She didn’t much care for the texture but seemed to like the taste.  We are working our way away from pureed foods and she seems to be enjoying the more chunky stuff!!

This is Peyton being entertained by her Mimi (who will also do cartwheels and headstands to entertain her!!) Notice her head and trunk control - Peyton's, not Mimi's:-)

Sweet Sleepy Baby

Please keep Peyton in your prayers and pray these movements we are seeing are not those awful spasms and that they will go away.

The Battle Continues

After my last post, Peyton continued to have 4 – 5 seizures a day.  Last week was quite eventful.  She was a little crabby last weekend and I just attributed it to the seizure increase, because that would make anyone crabby.  Last Monday morning I was at work and Peyton’s nurse called to tell me Peyton was screaming at the top of her lungs and nothing would calm her.  Ed was close by so he went back home and he couldn’t calm her either.  The screaming continued till I got home that evening and then every time she would nod off to sleep, she would jerk herself awake and start screaming again – I’m talking loud blood curdling horror movie screams.  Needless to say, no one got any sleep.  On Tuesday, we took her in to see the pediatrician and she had a sore throat and a fever.  No strep, just viral.  As thankful as we were for the source of her discomfort, there wasn’t much we could do for her except Tylenol.  She screamed on and off until Wednesday afternoon and finally she calmed down and is almost back to her normal self, just still running a low grade fever in the mornings. 

Peyton had an appointment with the dietitian last week and we have made some adjustments to her diet.  Her BMI is too high and her weight is outpacing her height.  Hopefully, the adjustments will help with the seizures and we will get some long seizure free stretches again. 

We have been seeing some subtle movements while she is falling asleep & waking up.  She will tense up and then release, tense up then release.  This is reminiscent of Infantile Spasms (although much more subtle than what she had in the beginning) so I contacted Dr. Tennison (her neurologist) yesterday.  I emailed a video of these strange movements.  He watched it and agreed the movements were really subtle, but something we need to keep an eye on.  For now, we are increasing her Vitamin B-6 to see if this will do anything helpful.  Sometimes, it feels like we are just shooting in the dark trying to find solutions.  Regardless, we will try this and if things continue then we will contact him again and discuss other options (not sure what these options are, but determined not to focus on that till we give this a week or two to see if things settle down).  If you haven’t read my past posts and don’t know what Infantile Spasms are, you can Google it and be as horrified as we are that she might be having them again.  There was a time back when all the seizures started that she was having Infantile Spasms but they were quickly controlled with Prednisolone and we haven’t seen them since and hope to never ever see them again.  Please say a prayer that this isn’t what is going on.  All Seizures are horrible, but these are especially horrible.

Peyton has a stander and she is in it for about an hour 5 – 6 days a week.  There is some concern over her ankles and feet so we went this week and had her fitted for AFO’s (Ankle Foot Orthosis)  These will help her stand and make progress towards walking eventually.  It was cool to watch them make the casts for the AFO’s and she did so good!!  I am excited about getting the AFO’s because I am all for anything that will help her progress and develop.

She has a new favorite toy – it’s a lady bug toy with crinkly wings and she LOVES it.  It is the first time we have seen her use both hands to play with anything.  She even falls asleep at night with it tucked under her little arm.  It is the sweetest thing.  She is still giving us smiles daily and we are hoping for some giggles soon!!

The Ride

Life with Seizures is a Roller Coaster – you learn very quickly that good days without seizures do not equal the end of the seizure nightmare.  Any parent of a child/baby/loved one with seizures can attest to the fact that the unpredictability of seizures sets you on edge all the time and any twitch, startle or strange movement makes you positively sick to your stomach.  The moment you become too relaxed and get accustomed to not seeing seizures, they seem to come roaring back.

After the 17 day run of no seizures (which we are still so thankful for) Peyton started having a few seizures here and there and suddenly on Saturday, her seizure count for the day was 18.  On Sunday, she had 12 and 7 already today.  Her ketones have been small to moderate instead of large so this may be a contributing factor.  We are working to get those large ketones back because that is when we typically see the best seizure control.

We are also concerned that because of her recent growth spurt, her phenobarbital levels may be low.  I have an email in to her neurologist to see if we can get her levels checked asap. 

Hopefully, we can get some control back and see less and less of these awful seizures until we don’t ever see another one.

This is the bummer news so now I will share the not so bummer news.

She is smiling DAILY!!!  Over the past 20 months, we have seriously wondered at times if we would EVER see her smile consistently and now we are getting daily smiles.  Those smiles are like balm to the seizure wounds. 

She sits in her kid cart and plays with toys on her little tray.  I used to sit and wonder if she would EVER play with toys.

She is trying to roll over and this is going to happen, I KNOW it. 

She is my hero…..every day.

Still taking this roller coaster ride one day at a time.

On a side note, Ed and I got to participate in a trip to Raleigh, NC to visit with two of our local representatives and two of our Senators to advocate for Early Intervention/Early Childhood Education.  It was an interesting visit and we hope we made a difference.  

See No, Hear No, Speak No.....SEIZURES.

I shouldn’t say it, I shouldn’t talk about it and I shouldn’t even go there, BUT, Peyton has gone 16 days without a seizure!!!  Omgoodness!!!  This is her new record.  She is still holding her head up….more wobbly on some days, but we are noticing big differences in her strength and her ability to move.  I am convinced that any day we are going to see her roll over.    She is giving us lots of half smiles these days.  We are expecting BIG smiles soon!  We are thanking God for all our Peyton blessings.

Lots of action in our lives these days.  Blake is playing travel basketball and last weekend his 3^rd grade team won the YBOA State Basketball Championship!!!  Go WNC Altitude!!

Tired 

guys - This is after we got home from the State Playoffs.

Mackenzie and Blake are in the last days of the school year and finishing up their EOG’s (which I hate and don’t even get me started!!!) 

Looking forward to summer time and enjoying time with the kids.  Time goes by so fast and we get so busy, we forget to just enjoy each other.

Kisses from Sissy are the BEST!!!!

Sleeping Beauties

Two of her favorite people on the planet sharing the feeding responsibilities:-)

To Infinity and Beyond!

Prayer

I would like to ask all those who read our blog to pray for another child that I have heard about thru a mutual contact.  Her name is Emma and she is 4 years old.  She was born with severe neurological issues and has not only survived (against all odds) but flourished developmentally beyond anyone’s wildest expectations.  I don’t know this family personally, but I know they have been tireless and faithful in their efforts to help Emma and to use any and all resources that are available for her – stories like Emma’s truly inspire me.  Her parents are true heroes to parents like me who have started this journey more recently. 

Emma is having surgery today or tomorrow and the next 10 days will be a tough road for little Emma and her family.  Please keep this precious child and her family in your constant prayers and please share this request with your own circles, churches and family.  I will be receiving updates on how she’s doing and will post them. 

Thank you Peyton’s friends for adding another sweet child to your prayers!!!

Patience is a Virtue

Peyton is starting to gain some head control.  This is a long time coming!  We have almost completed one more wean of a seizure med so now she is only on Phenobarbital and the Ketogenic Diet for seizure control.  She takes several supplements, but this is vastly different from where we were a year ago with her meds.  At one point, she was on five different seizure meds.  So thankful those days are behind us!

Seizures are sporadic with her.  She has had two or three in the past three weeks.  The seizures really are getting better and better and as the seizures sloooooowwwwwllyyyyyyy decrease, her development takes teeny tiny strides.  She is using her arms and legs so much more and doing so well with all her therapies.

 

Patience is such a vital necessity when working with special needs of any kind, whether your child has a speech impediment, learning disability or more serious delays.  Nothing happens overnight and some days it’s so hard to press on when you feel like nothing is being accomplished, BUT when you start to gain a tiny bit of ground or your child FINALLY does something that comes so easy for others, there is just no way to describe the joy in that.  All the hours of hard work and implementing all the things we have learned from Peyton’s therapists is finally starting to pay off.  When I see her bobbling that sweet little head of hers and showing us that she can really hold it up, I feel like she has won an Olympic event.  I can’t imagine feeling any prouder. 

Lots of other good things going on…….Peyton’s nursing aide has been a fabulous addition to the Peyton Team and we are so blessed to have her…….Summer is coming and the kids have a few weeks of school left – they are excited and ready for a break……we took a vacation for Spring Break and went to the beach and had a wonderful time, Peyton loved the ocean breeze!

Posting some pics and good weekend wishes for everyone!!!!

Daddy bought her the shades!

Nice nap in the shade at the beach.

The kid cart became a nice clothes rack at the outlets at the beach.  Peyton didn't mind, she just slept thru the whole shopping excursion!  

Check her out holding her head up - not the best pic, but you get the idea!!

Look at the sweet girl holding her own bottle!!  

Seizures aren't funny

So, our sweet middle child, Blake, came home from school yesterday and was a little bit upset about something that happened during recess.  One of his classmates asked him what was wrong with his baby sister and Blake told him she had seizures.  Well, evidently, the little boy and some friends starting playing a ‘game’ where they would  hit each other and say, “Oops, sorry, that was a seizure”  This rankles (is that a word?) me.  Not because I think these little boys were making fun of Peyton or of Blake.  It just rankles (I like that word!!) me because I know the horror of seizures and so does Blake.  We have seen first-hand how they can devastate.  We hate them at our house and we fight them as hard as we can so I guess it’s hard to swallow when someone makes a game out of something that has been so awfully and personally in our faces for the past year. 

So, how do I handle this??  I called his teacher and left a message for her to call me.  She is a sweet and understanding lady, so I am certain she will help out in whatever way she can.  I think an awareness of how making fun of something you know nothing about can be so personally hurtful to others.  I honestly don’t believe these feisty little third grade boys had any inkling of how much this bothered Blake or maybe they did, but they ARE feisty little third graders so I can hardly be upset with them. 

I know that in my life I have been apathetic to things like seizure disorders, special needs, etc….but having Peyton has changed my entire perspective and if I could go back and exhibit a little more compassion and understanding, I would.  Now, don’t get me wrong, I was never mean to anyone with special needs or delays, but since it really didn’t affect me or mine I didn’t pay a lot of attention to it – this seems so selfish in retrospect. 

Being the sibling to a child with special needs is a unique role and I feel like our kids have handled it so well.  They are my little heroes on a daily basis and they love Peyton as unconditionally as Ed and I do.  They are both fortunate to have a great school and such great little friends that accept them and love them and love Peyton, too.  I worry a lot about what Peyton can’t do and how many hurtles she is going to face in her life, but when I see the lives she has touched, it makes me realize how much she already has done.  

Her circumstances are a daily education…..a very humbling education.  

Seizures and Smiles

What a couple of months it has been!!!!  Peyton had fewer seizures in February than she has had since all this started back in January of 2010.  She actually had two stretches that lasted seven days and then several 3 and 4 day stretches.  It was GREAT!!!  In spite of the hospitalization for dehydration, the temporary feeding tube, the tonsillitis, and all the other little bugs that attacked her immune system.  So we go to Chapel Hill the first of March and bragged on how great she was doing and her neurologist was very pleased with her progress and even agreed to start weaning one of the two seizure meds she is on (the Keppra, which we never felt really helped her).  We also saw a new dietitian that same day and she was great.  She spent a long time with us and we decided it was time to wean Peyton back on to Dairy (ketogenically, of course!!!)  We formed a plan and then headed home…….

The VERY NEXT DAY the seizures started up again and she had an awful week or two.  She had more seizures in one day during that time then she did the whole month of February.  Talk about discouraged!!!!  We think maybe we were trying to make too many changes at one time…the dairy introduction and the wean down of the Keppra, so we stopped the wean down of the Keppra and kept at the dairy.  She is now totally back on Dairy again which makes the diet a little tastier for her.  She gets heavy cream and butter or Velveeta cheese mixed in with all her baby foods.  We will attempt the wean of the Keppra in another week or two.  The seizures have slowed back down again and she is currently on day 4 without one, so we’ll take it!!!! 

In other news, she has been approved for Cap-C, which means she qualifies for a nursing aid that will come to our house for up to 11 hours a day, depending on the need.  We are thrilled.  The process has begun and Peyton’s first nursing aid has been great!!!  We have some really great people at the nursing agency working with us and they are very understanding of what a difficult transition this can be but so far so good!

Peyton SMILED for real!!!  About two Saturdays ago, Mackenzie was talking to her and entertaining her and I heard Mackenzie squeal, “MOMMY, COME HERE, SHE’S SMILING”  I walk over with not much hope that is really what’s going on since a lot of times, when Peyton is having a seizure, she appears to be smiling, but it’s just the seizure.  But low and behold, Mackenzie is right, Peyton is SMILING, real smiles.  It was so awesome.  I grabbed my phone and got two cute pics of it which I will post below.  Mackenzie cried and cried tears of joy.  It was a precious precious moment.

Currently, Peyton is battling daily fevers.  It’s the strangest thing.  She woke up last Saturday with a high fever of 104 and throwing up, but she quickly got better and only felt bad for the day and by that night, the fever was gone and her tummy was fine.  Every day since, she will wake up with a fever (anywhere from 100 – 102) and by 9:30 it’s gone.  We called the ped and they said it is probably the virus from last weekend slowing leaving her body.  We are hoping the fevers go away and don’t end up being something more serious. 

Happy Weekend to everyone!!!    

PANIC

I am panicked today. 

Peyton is doing better. The feeding tube is out.  She is having fewer seizures (I’m actually afraid to type how few).  She is starting to babble and even can imitate a few sounds.  She is doing a tiny bit better.  She is really really starting to hold her head up more and more.  She has a long way to go but we are seeing baby steps of progress. 

I am panicked.  I am nervous.  I am afraid to be optimistic!!!  What is wrong with me???  I feel like if I get too hopeful that I am setting us up for heartbreak.  I want so much for her.  I am so afraid for her.  

I need to relax.  I need to take a breath.  I need to enjoy her.  I need to enjoy watching Ed and the kids enjoy her. 

I am still afraid.  I have a knot in my stomach when I think about the fewer seizures, the babbling, the head control.  I am terrified.  I want to just be happy and enjoy all these good things.

Fear sucks.  So does the seizure monster.

I am working on the fear and I will always hate the seizure monster.

Next post will be nothing but positivity…..I promise and some cute pictures. 

Actually, here's one of my favs now....

The Good and The Bad

I will start with the bad since I want to end on a good note.

Peyton is still not eating great.  We got excited yesterday because she took some bottle and some applesauce, but this was short lived progress.  She wouldn’t eat anything the rest of the day and we had to feed her thru the tube.  Her seizures are acting up today and who knows why.  I just know I hate seizures and they are mean and stupid.  So she isn’t eating today either, but we will keep on trying.   I don’t know what all this means long term, but I don’t want to think in the long term right now….I will stick with the short term thank you very much.

The good news….which is bittersweet since she is having seizures again today, but let’s be positive, shall we?

Peyton went ONE WHOLE WEEK with no seizures.  This is the longest stretch since they started.  We are thrilled with this.  This is progress and this is the diet.  The ketogenic diet is truly wonderful and as big of a pain as it can be, I don’t want to imagine this past year without it!!!

Developmentally, Peyton hasn’t made huge strides, but she has made small strides.  She still can’t hold her head up, but she tries.  6 months ago she didn’t try.  She will touch the IPad when I bring up the baby apps.  6 months ago, she wouldn’t touch it.  She shows interest in the world around her.  6 months ago she didn’t.  I have to put all this down on paper sometimes so I can remind myself that she is making progress. 

I guess I am in a bit of a funk today.   Life with seizures is a roller coaster.  I wish our family could step off the roller coaster.  I don’t like this roller coaster. 

I said I wanted to end on a positive note, but I guess I didn’t.  Seizures have that effect.

Home Again Home Again

So our quick little overnight hospital stay turned into a three day stay.  Peyton got nice and hydrated then quit eating.....at all!!  She has not been eating well for the past few weeks so this was a concern and had obviously lent to the dehydration.  A temporary feeding tube was put in and we ended up coming home with the tube in.  We are still trying to get her to eat, but she is teething something fierce and not at all interested.  We are giving her the calories she won't eat during the day thru the tube and that's going well, but not something we want to do permanently, but of course, we will do what we need to do for Peyton!

She ended up in the pediatrician's office today because she has been crying inconsolably....I mean for hours on end.  We think her teeth may be the culprit, but don't really know.  The ped did blood work, checked her all over and found nothing wrong so we are going to pray she feels better from those teeth very soon!  If the crying continues, we take her back again tomorrow.

This is a pic of her in the hospital loving on her "dollie"  Her big brother Blake, brought this to her and she instantly liked it.  Not much catches her attention, but Dollie sure has!!

In the hospital

Peyton was admitted to the hospital this afternoon for dehydration. She has not been feeling well for about a week with a cold. She hasn't been eating very well either....due to drainage from the cold and some reflux issues. She woke up this morning with a temp of 101.4 and was so lethargic and not eating at all. We took her to the peds office and he decided to admit her for some IV fluids. She has been getting fluids for several hours now and we can already see a big difference. Her color is much better and she has taken some bottle since we arrived. Praying this is a quick little visit and that we will be home again tomorrow. This is her first hospital visit that hasn't been due to her seizures so it's a little strange not to have her hooked up to the EEG but we aren't complaining!